
NINDS expects the clinical research it funds to meet the highest standards of scientific rigor yet, appreciates the burden that extensive data collection puts on investigators and study participants. Further, the Institute leadership recognizes that investigators independently identify data elements and forms for each study, many of which could be common across studies. As part of its effort to facilitate research of the highest quality yet, streamline clinical trials data collection in neurological studies, NINDS initiated a Common Data Element (CDE) project.
The NINDS Common Data Elements website serves as a repository and dissemination tool for all NINDS CDEs for Investigators to utilize for trials being planned, and ongoing research. The website assists NINDS clinical researchers by providing access to NINDS Common Data Elements (CDE), definitions, and sample data collection forms.
Propose the development of new CDEs or revision of existing CDEs
The NINDS CDE Project Request Form can be used to propose CDE development for Neurological disease/condition research areas with no existing CDEs, for development of a new subgroup of CDEs for an existing CDE set, or for substantial revisiting/revising an existing CDE set.
Overview of the NINDS CDE Project
Currently available NINDS CDEs
- General [flyer(pdf, 254 KB)]
- Amyotrophic Lateral Sclerosis
- Cerebral Palsy
- Chiari I Malformation
- Epilepsy
- Friedreich’s Ataxia
- Headache
- Huntington's Disease
- Mitochondrial Disease
- Multiple Sclerosis
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
- Neurological Rehabilitation (NeuroRehab)
- Neuromuscular Diseases
- Parkinson’s Disease
- Spinal Cord Injury
- Sports-Related Concussion (SRC)
- Stroke
- Traumatic Brain Injury
Questions about NINDS CDEs?
Contact Carolina Mendoza-Puccini carolina.mendoza-puccini@nih.gov